Cast Removal

We got our casts off!! Hooray! The summer has been SO long. To top it off, Grayson is low on Iron. So the last few weeks have been extra hard.

We got to our appointment and got right in. We visited the casting room with Adam, the ginger casting dude. He was happy to see us with no more mold on our feet. He was especially happy that no more water was in our around our casts.

 And the saw was incredibly loud. Grayson was a bit not OK with them on his brothers legs but it was cool to watch them take it off. 

That is Adam, cast dude, cutting off the nemesis of our summer. We were hoping and praying that there was no more mold. 

When we got his casts off we looked at his STRAIGHT feet.. that is right. Straight feet! And then started pulling off the other gaze that we added on his REALLY gross feet. When we got to the tape, I knew some thing was wrong.  

 Casts off both feet. Steri strips left to look under. 

 The black stuff is the mold that left a black/green stain on his feet that hasn't  come off yet. 

The black/green is the mold on this foot as well. It hasn't come off. There is still some left on his skin.

This is where things got a bit interesting.  The steri strips were coming off a little and this gross GREEN thick stuff was all over his steri strips. Adam, the ginger worker, went to go get the doctor to come and take a look at it and yep. It was just like we thought.  INFECTION.......

 Steri Strips were taken off and it was GREEN 

 Iodine was out around it and we washed it off. It was still weeping really badly. 

This is what we are left with. A gaping hole in his leg that is nasty and gross and runs the length of his bony shin. 

We took X-rays an his legs look amazing. His X-rays looks amazing. The surgery looks amazing. But his sore looks awful. I asked if it was because of the mold. She didn't come out and say it was my fault but because I let him get moldy feet it IS my fault. So the mom guilt has set in. But I am the wound care lady. And that means I am the one that gets to rip off a band aids on his feet. It hurts him. It hurts him and it breaks my heart.

After our appointment we headed off to the Orthotic place that makes our braces. They put back on 2 casts... YEP another set of casts. And took them off - HOORAY! as fast as we put them on!

Tyler was pretty patient and Grayson LOVES this office. He has THE BEST little boy toys in the entire world. Grayson never made a peep for the entire time we were there. He was great.

It feels good to have his feet off and he does get to shower. But no scrubbing his legs. I pack his wound 2 times a day. He is on an antibiotics 4 times a day and we go back in a week. A week for braces and then a visit with orthopedics and hopefully get the clear to start walking again.

This has been such a hard summer for us. We are glad it is almost over!

Pots and Kettles

You know that time that you are reading something and you think.. "SHUT UP! I do/did/ OMG that is happening, all the time."

Yeah, that is me.

Facebook. Oh dear facebook... You teach so many lessons.

Recently a friend/acquaintance that has spent the last year going through a trauma posted about people complaining about mundane things, when they should be thankful because they are not seeing  their baby dying or being sick. And I realized I use to do that.

I say use to because I did. Something I learned is that I can't judge a person by what I have had to go through.

Example #1: When I was pregnant and shortly( 8 years or so... cause it still bugs me but I don't say anything any more) after it bothered me to no end when people would complain about being pregnant. One of my best friends from my mission married a girl. They had a typical pregnancy and I was friends with his wife while they were going through their pregnancy. She started to complain about her pregnancy at 32 weeks. She was really adamant about some things and I made what I  thought was a innocent comment and I got hate mail. LOT of it.

See, having had a 25 weeker, I can attest that having a baby early is not the best idea. I have learned that people never think that their kids will never come early. They, like myself, never imagine that the inside of doctors offices would feel like home, or that you will become best friends with your pediatrician. But then it happens. So hearing people complain about mundane things, like being uncomfortable and wanting an early baby would make my hide chapped.

But I have learned to them, they will never experience what I did, in order to be upset about anything else. Therefore, I can't expect the to understand why it would hurt my feelings.

Example #2: On Facebook ( see I told you, the place is FULL of life lessons.) there  is a run on moms who get worried or upset over sending their kids into the operating room for ear tubes or strabismus surgery. They carry on like this ONE surgery is the end of the world. I think " Come on, it isn't brain surgery."   But then I realize that this is just as hard for them as something like brain surgery, or botox is for us. Botox is no big deal. We don't think of the eye surgery or tubes as a big deal because we have done brain surgery, but the feelings of handing over your child is the same going in for small or big. Every mom is torn as the surgeon walks away with their child.

Something that I am not perfect at but am trying really hard is making sure I look at it not from my experience but theirs and then not passing judgment on them for what choices they make.  I don't know why they make the ones they do. I know what  and why I have chosen what I have based on what I have gone through.

I guess, I am calling myself out. The pot calling the kettle black. In hopes of becoming better!

"Let people repent. Let people grow. Believe that people can change and improve. Is that faith? Yes! Is that hope? Yes! Is that charity? Yes! Above all, it is charity, the pure love of Christ. If something is buried in the past, leave it buried. Don’t keep going back with your little sand pail and beach shovel to dig it up, wave it around, and then throw it at someone, saying, “Hey! Do you remember this?” Splat!

Well, guess what? That is probably going to result in some ugly morsel being dug up out of your landfill with the reply, “Yeah, I remember it. Doyou remember this?” Splat.

And soon enough everyone comes out of that exchange dirty and muddy and unhappy and hurt, when what our Father in Heaven pleads for is cleanliness and kindness and happiness and healing.

Such dwelling on past lives, including past mistakes, is just not right! It is not the gospel of Jesus Christ. In some ways it is worse than Lot’s wife because at least she destroyed only herself. In cases of marriage and family, wards and branches, apartments and neighborhoods, we can end up destroying so many others." * Elder Holland*

I have no witty tittle and I am all done. There are boxes everywhere and most of all we are in a world of chaos trying to start a routine. The hardest part. Seizures.

Seizures.... That is right. Not just one, but lots. LOTS and LOTS. Like ten to 12 a night with 5-6 in the day time. We have an exhausted 8 year old, and angry 8 year old. A tired mom, a strange acting 3 year old and very tired dad.

Tomorrow we discuss toilet adapting at school. He holds it all day. We are going to end up admitted if we can't get some BMs and pee coming soon. Ear check for baby tomorrow and unpacking.

New meds start in the morning.

Sleep.... We all need sleep

CLVE

Clinical Low Vision Evaluation. 

That is what we did the week we were getting better from the Flu. And the truth is, it was NOT very fun and I left feeling so down that I spent part of the evening in my bed crying.

So the CLVE was set up through the Foundation for Blind Children of Arizona. We went to a location that was LOADED with as many snow birds as could fit in one location. They were all trying on canes, and getting equipment and stuff for the Macular degeneration and glaucoma. Instead of books to read, they had CCTV’s available so you could read the magazines that were left on the counter. The wall was filled with AS SEEN ON TV keyboards. It was a blind persons dream.

Ty was totally cool with the CCTV’s and we read a few books we brought with us. I filled out the countless pages of paper work and his vision teacher came to met us. Her name is Jenny. Tyler calls her Jenny the Pirate.

To make sure that Ty was at the top of his participating game, we kept him home from school. He had only gone on Wednesday and Thursday because of the flu. Ty had a low low key day, and he was properly bribed to participate.

So what is a CLVE, well we sure as heck didn’t know. So this is what we learned.

1. Intense background and medical history of the patient. In this case we actually struggled to get our doctors in Utah to provide us with a detail of ANYTHING. They just switched doctors and it was a real struggle so we went off the last detailed list of stuff that I had sent to school. Which in fact, was NOT what I had actually sent to school but lesson learned for me. Keep a better record. 
2. Depth perception, color testing, contrast of color, light sensitivity, ability to process what they see. While that seems like a lot, most can be done in a series of a few tests.  He did really well and they were very hard for him to do. When things get hard for him, he does a few things that signal to me that we are going to meltdown soon. 
3. Eye exam with the big chart. Ty does really well with these. He did what he could and then the sadness and meltdowns came into play. 
4. A lot of the rest of the appointment was what was Tyler like in a school setting, home setting, a situational setting. This is where it gets more and more frustrating for me as the mom. They also talk about future goals, things that will be happening and things that won’t be happening. Things that we can see as progression and things we can see as he gets older and things that we can expect as he gets older. 

The purpose of the CLVE was to get a specific piece of equipment that can go with Tyler throughout school. It will enlarge his papers, allow him to write, and also allows the computer to help him read when his eyes are to tired to continue to do so. Right now, he is minimal things that require long term memory to read, so it isn’t as much of an issue. But later in life, it will be. Especially when chapter books and texts books come into play. For now he needs basics, but he needs something basic and then some. 

Ty will be getting a Davinci CCTV for his class and it should follow him through school at the district. We are pretty impressed with the Davinci and really like it. It has way more features than he needs right this second in time but as he grows older he will need what it has to offer. 

We have found he has a severe sensitivity to light and should be wearing sunglasses, but transition lenses don’t come in his prescription and getting him to willingly change into sunglasses is a joke. And because his vision is crappy even with correction, he fights us to even wear those. 

His eye sight with correction is still really bad. He is known to have about 20/500 vision. That is REALLY bad. The picture below is what he sees even with correction. 

For now we work with Jenny, the pirate, Tyler’s vision teacher. She helps everyone enlarge everything and make sure that it is in the size he needs and how to help him do better. 

Ty doesn’t notice he can’t see, He pretends he can. People don’t realize he can’t see. We are trying to accommodate him in every way possible and to help others adapt to him in whatever way possible. My calling at church is his teacher, which has opened up a dialogue with the Church’s disabilities department to get some better visual impairment products and books. We are also trying to figure out what we can do to provide him with the stuff we need here at home. 

So don’t get to alarmed when he doesn’t know who you are or he wants to touch you or comes up really close. He is super smart and will remember who you are. He is also learning to get to the park on his bike with no help ( of course he won’t ever be able to go without someone following him because he can’t see cars coming down the street!) but he is doing really well navigating in a world that was not meant to be seen in the dark. 

We made it...sorta?

We have hit and surpassed our gestation with Tyler. We have never been THIS pregnant. As of 1:24am this morning we have done it.

Yesterday after doing a craptastic job of barfing ALL day and feeling horrible ( but no complaints.. just glad zofran and phenergran got refilled!) we went grocery shopping. As I was putting the LAST load of stuff in the house I became full of grace and went flying. I tripped up the last of the steps and had my hands full and landed right on my tummy.

I started crying and poor Tyler came running over to see if I was ok. He grabbed his cute Mickey Mouse pillow and tried to push me up. I asked him to go to the couch and find my phone. I sure thought we were DOOMED at that point. He was looking and looking ( pretty good for the blind kid!) and said "Oh no I can't find it anywhere." I told him to keep looking at he shouts " Look I found it!"

I texted and called D and told him what happened as I sobbed. I called on call OB and they told me that my doc suggests that all his patients that fall come in. Come to find out my OB was actually on call. Had we known that we would have gone to Provo. Instead we found our way to Riverton.

We went to the insta care ( urgent care for all the non IHC folks) ( because ya know, at a time of emergency the thought of paying an ER bill almost gives you a heart attack!) and knew that we had a MUCH smaller co pay and they would take us to the ER if needed. Instead, they took us up to Labor and Delivery where we were put into a room and told that we be there for a few hours.

We had Ty with us and he did SOOO well. He loved playing Doctor Tyler and followed the nurses everywhere. In fact he was so ok with everything that he even LEFT with one and came back with all these snacks.

We got hooked up to the monitors and really kinda laughed. We were at exactly 25.3 weeks according to our due date ( according to conception date we were 25.2) and that is the EXACT gestation we had Tyler. So we were a ball of nerves already. Last time ( for Tyler) he was to little and they couldn't pick him up on a monitor. When I would have a contraction last time they would look for his heart beat with a Doppler. Well this time, he was big enough and moved enough that we were able to hear him. They got the other monitor on and as Grays was kicking it would make a loud sound.

Ty would lay by me and ask "What is that squeaky noisy" and when I told him it was Grayson he said " Grayson makes a sound like blug blug blug." It was great to hear him understand everything. His grandma came and took him for some chicken nuggets and he feel asleep at her house. While they were there I started to feel SUPER uncomfortable and as they were leaving I finally called the nurse. She came in and started to chuckle when said I need to either readjust or something. She said or you could just stop contracting.

She was a great nurse and sarcastically ( just the way we like it) and said they had 2 docs on the floor. One was just finishing up a section and when given my chart and our history of a 25 weeker and that we were 25 weeks he jokingly said he was no longer there. The other OB was a little nervous and started really being cautious.

I started puking as she told me the plan of action ( nerves, or just pregnancy we will never know) but she told us we were going to do a dose of terbutaline, run a fetal feberonectin Test ( ffN) and then check my cervix. The shot burned but was do able, the FFN was amazing and awesome :( * drenched with sarcasm* and well lets just say I LOVE cervical exams too!

Seems that the terbutaline did it's job. After getting Grayson back on the monitor we were able to watch as my contractions became a steady line. They were able to do the FFN and the cervical exam showed a fingertip dilated which isn't horribly uncommon if you have had a kid.

After another hour we were able to go with instructions to call my OB in the morning and take it easy. D went and got my Tyler and they came home. Ty has been a BEAST since then. But it seems we all survived the day.

We did have a quick check appointment with my OB this afternoon. Grayson is still hanging pretty far in my back and doing well. He was much slower today after the shot of Crack/terb they gave me and we were able to get our progesterone on board for the week. Seems that we are ok for now and our Peri will see us on Tuesday and hopefully we get a decent peak of cervix and baby cakes! Then the next week we see the OB.

I am so glad that D listened to the spirit when he called me and said he felt we should go in. Though nothing progressed I would be horrified and scared if we didn't and something was wrong. A huge thank you to my dad and mom. Not only did they bring me a batch of donuts but they entertained Tyler and made me feel a BIT better about staying off my feet. I really appreciate them more than I can say. A HUGE thank you to my sister for volunteering. Next time she is the one I am calling cause she will give him his meds and a thank you to D's mom for taking Ty.

Thanks to all my amazing friends and family who sent us messages and text and phone calls and offers to help. It is VERY appreciated. Watch out though, I MIGHT take those housekeeping offers up! My place could use a good scrub.

Way back When- Wednesdays

I needed a place to link people back to our story. Since we are not on the same blog we were on then I thought I would start from the beginning and Way back When is what will happen..

SOOOO Our story. WAY BACK WHEN:

This was written by Dallas when we were in the NICU. I was kind of out of it and not up to par so he started me a website for Tyler. This was the second post. The first was just letting those who saw it ( which was like no one) that we had Tyler. This was his experience that night.

This all started two nights ago when Nancy started feeling cramps at 25 weeks into her first pregnancy.
The next morning (yesterday 9-20-05) she called her OBGYN and reported having some cramps and some discharge.
She was told that since there was no current cramping just to watch it.
Then at 8:00pm she started having really bad cramps which turned out to be contractions.
Around 10pm she started vomiting and the cramps got so bad that I insisted we go to the hospital.
So we took the drive to Alta View hospital.
When we showed up in the ER we were automatically taken to the women’s center.
After some tests the doctors found that Nancy was completely dilated and the sack was protruding.
They also found that the baby was head up, so they called for Life Flight to take her to either LDS Hospital or the U of U Hospital.
Life Flight showed up however they were unwilling to take her since she was fully dilated, because they have a rule that they do not transfer if the woman is dilated at a 6 or above.
Therefore Life Flight and the doctors argued back and forth in front of us for a good hour, each trying to convince the other of their recommendations.
They were getting ready to finally decided to take her when the doctor decided to take one more look.
He then found that the baby was coming right now and she could no longer be transferred.
Life Flight therefore left and they prepped Nancy for a c-section.
Once the original Life Flight left they called in the newborn Life Flight specialists and the doctors took her into the OR. (I was unable to accompany my wife since they had to put her to sleep.)
The baby was delivered at 1:24am, bottom first.
The baby was rushed into ICU where he began steps to save his life, including chest compressions on his frail little body.
By this time the new Life Flight had landed and was helping the doctors stabilize Tyler.
Once he was stable enough to transfer they pushed him into the room with his mother for a quick glance and a Priesthood blessing.
They then rushed him to the helicopter, where I helped them load my new baby son into the Life Flight helicopter, and then watched them take off to LDS Hospital.
Then I went in and briefly talked to my wife and then headed to LDS Hospital.
When I arrived he had already landed and they were taking steps to stabilize him again.
After a long wait they finally allowed me into the NICU to see my son after landing.
There was my first and only child, tiny as could be hooked up to all types of equipment.
One of the nurses kindly sat with me and tried to explain everything that was happening.
At 6:30am they made me leave and so I therefore headed home after being awake for 24 hours straight and having a roller coaster of emotions.
Once arriving home I was unable to get any sleep as my emotions and worries once again overtook me.
It is now the afternoon after this amazing and terrifying experience and I have yet to get any sleep.
I have visited my wife again and from all reports mother and son are doing as well as can be expected with the baby being this early.
This is a miracle that is still in progress. Especially since when we were first told we were having the baby this morning we were also told that the chances for the baby’s survival were not very good.
I was later told that my son is a fighter and that is a great thing and that his chances were now at about 80% that he will survive.
Since he is so early he is also unable to create his own red blood cells and therefore with the loss of blood and the blood taken for tests, I was told he would have to have the first of many blood transfusions throughout the next few months.
His blood type is O+ and we thank all that donate blood, and especially thank the unknown people whose blood Tyler has and will get.
I would also like to state that the Women’s Center doctors and nurses at both LDS Hospital and especially Alta View Hospital were SO amazing and so thoughtful and helpful.
We ask all too please keep our family in their thoughts and prayers, as we still have a long, expensive, and tough battle in front of us, with at least 3 months in the hospital.
If all goes well we hope to be able to finally take him home around Christmas.

His version is a lot of what I remember. He doesn't post some of the details that he has since remember or always did remember and didn't' want to share. His journaling of that experience has been so amazing for me!

So stay tuned. We have a LONG story to tell.